playing doctor with tamoxifen

April 28th marks two years since my diagnosis. June 1st marks my second cancerversary of my surgery and subsequent treatment.  This upcoming  October 28th marks two years on Tamoxifen.

photo

Let me be honest about Tamoxifen once again.  I don’t like it.   I have said it before and will say it again: Being on Tamoxifen sometimes is hard.  I have mood swings and hot flashes.  Some days I just feel a slight undercurrent of blah achy tiredness for lack of a better description.  Some nights sleep doesn’t come easily, and some days I hate the way my skin feels and looks.

Sigh.

Emotionally and physically some days Tamoxifen is just tough. Some days  Tamoxifen turns my emotions into the Moody Blues.  I seem to be feeling things at a more elevated level as this drug that will live in me for five years continues to settle  in.

Tamoxifen so screws with my sleep some days I am down right miserable some days as well as exhausted. And the hot flashes and night sweats  honestly suck. Some days, I feel like a hot mess.

Truthfully, I have never had a terrific self body image – that has nothing to do with breast cancer that has more to do with a mother that as much as I love and adore her from the time I was a tiny child one of her life lessons was her constant obsession with how people looked: their weight, are they sloppy, and so on.  She still obsesses over that and is especially still obsessed with how much people weigh.  (Phrases like “she just let herself go” and “all that soft fat” will be forever burned into my brain.)

So for me Taxmoxifen with its emotional and physical side effects is hard.  It is NOT insurmountable, but it is hard.  And I hate the way my skin is so dry now that the estrogen is getting sucked out.  I am lucky compared to some because I have not felt the lack of libido some women complain about, that’s all normal so far.  But the weight issues, the tiredness, and the hot flashes that some days just make you feel limp.  And with Tamoxifen some days are the days of the leaky bladder and feeling like you always have to go. And why is all this happening? Hello, your body is getting forced into menopause.

However, I have to be practical: I was going to hit menopause sooner or later, right?

So as much as I complain, would I ever just pop myself off Tamoxifen without the advice or counsel of my doctors? No way.  I might be my own best advocate, but I am no doctor.  And certainly not a fool. I know the interpretation of my oncotype test and low score is partially predicated upon the fact I will be taking Tamoxifen for five years.

Until yesterday, I never quite understood the concern on my oncologist’s face when we were first discussing Tamoxifen and I was a little scared about it.  Dr. Hartner looked me straight in the eye and said something to the effect of “You are going to take it, right?”  I mean of course, I was going to take it, I was far more fearful of my reality if I did not take Tamoxifen.

My doctors are monitoring me closely.  And that includes frequent visits to my gynecologist / endocrinologist , and to the lovely ultrasound /MRI people.  I had other issues prior to breast cancer – fibroids, cysts, ovaries that never worked right as a fallopian tube just filled with fluid.  Sounds gross, but at the end of the day it mean I would never bear my own children.  (I now have a wonderful step son, so God took care of me on that, didn’t he?)

So back to what made me sit here this morning in my “Cancer Sucks” T-shirt typing away furiously.

I am part of this breast cancer group.  And yesterday on the message board a woman whom I do not know and who is one of the many of thousands of members says:

I  secretly stopped taking it when I read the statistics .  I am not trying to be negative but it wasn’t worth the way I felt and the hair loss.

Ok, well I have not experienced hair loss with this, but that could have happened in regular menopause too.

She then continued:

We all do what we feel is right for us. I would really like “them”  to come up with something else. I opt for living also, doesn’t mean Tamoxifen is the answer.

Sweet Jesus.  This woman took herself off cancer meds without telling her doctors or discussing it with them first.  Sorry but that is not being your own advocate, that is being a little cray cray and playing Russian roulette with your life.

Then another woman pipes up and said she did it too.  I mean for real?  Sorry, I sound like a strident bitch here, but I think this is unsafe behavior. I mean seriously is this any better than having unsafe sex?

Also, what I have learned is that many of the other drugs given as alternatives (aromatase inhibitors) to Tamoxifen actually can be harder side effects-wise. To each their own, but how can you expect your doctors to do right by you if you come off meds they prescribed secretly?  They are plotting your course of care based upon the fact they think you are taking your meds.

I will freely admit I  just have a really hard time with someone who says they came off a drug not because she discussed it with her doctors but because of among other things stuff she read on the Internet that she did not discuss with her own doctors.

Her excuse seems to be in part that her doctors aren’t spending enough time with her.  Well hello, they aren’t psychic, so they won’t know things are wrong unless you tell them.  And given how overburdened some areas of medecine are that means sometimes you have to get in their face about stuff. Good lord.

This woman (who I am not trying to villify, it is just simply what she is doing scares the crap out of me) said that she did not feel guilty about being her own advocate and doing her own thing.  Had to scratch my head on that one – you are paying for health insurance and treatment so if you want the best for yourself how can you just sort of blithely engage in  risky behavior?

Can I say it again? Sometimes you have to engage your doctors on your own. Oncologists are often overwhelmed. And I’m sorry to sound strident or sound like a bitch but there is it a big difference in my mind between being your own advocate and being a fool. What she did was her choice, but there’s nothing glamorous about it, truthfully it’s irresponsible and high-risk. But it’s her life.  It is not a question of guilt, is a question of being smart about what’s going on with your own body. For this woman’s sake I hope removing herself off the Tamoxifen doesn’t do her more harm than good down the road.

And that my friends has nothing to do with “Big Pharma” and their “power.” It has to do with deviating from a course that is proven to extend the lives of breast cancer patients.  And for what it is worth, one of my friend’s mothers was one of the test patients for Tamoxifen when it was released to market all those years ago.  She is still alive today and kicking – full life no other issues.

I rarely share personal photos but I am today.  A photo of dinner with my sweet man, the love of my life and one of my best friends and her husband.  It was taken Valentine’s weekend.  In spite of it all, what do you see? I see happy people grateful for the gifts God has given them.

And but for the grace of God go all of us.  For me personally, I owe a lot of thanks to some amazing doctors.  Along with God giving me an amazing do over in my life.  So the moral of the story is, as much as I hate taking Tamoxifen some days, I want to live.  I want to live a very long time.  And I will fight for that.

So if you are out there having issues with Tamoxifen or fearing starting it: talk to your doctors.  Don’t just ignore taking it or just take yourself off of it.  Cancer is indeed an exhausting war at times, but you need to fight those battles.  So fight smart and reach for those stars.  They are attainable, trust me.

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About carla

Writer, blogger, photographer, breast cancer survivor. I write about whatever strikes my fancy as I meander through life.
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7 Responses to playing doctor with tamoxifen

  1. I’m puzzled by the attitude that these women are sure they are doing the “right” thing, yet hide it from their doctors. When I’m sure about something I have no problem speaking up. How foolish.

    • pcav89 says:

      This is well said. I agree and I can tell you that Tamoxifen is hard to deal with but that is because the therapy is to general with it. You might have better luck with the controlled and tailored use of Aromasin with or without Tamoxifen as it will not have the rebound effect that stopping the tamoxifen does and may help you avoid some of your swings and keep you more stable as Aromasin is an (AI drug) and will be more stable since the inhibited estrogens do not rebound and have the possibility of binding to the receptor again in an on and off fashion. There is a lot of research with real sources and studies done on this subject that you can find pretty easily if this is important to you.
      Lastly, I’d like to recommend that you research the benefits of supplementing progesterone and talk to your doctor about using a USP Progesterone cream to combat some of the side effects. Many women have rerouted of serious and fast relief as well as men having relief from many hormonal symptoms just by applying progesterone cream to their wires bodies regularly with their bare hands. There is proof of this if you look you can find it, I just don’t feel like finding the sources.
      Good luck to you however you chose to go in your future treatment. I’m not a doctor or a claiming to know anything at all so please remember to always consult your doctor when dealing with your hormones as people do not understand the consequences of changing your treatment behind your doctors back.

  2. sara says:

    I took Tamoxifen and experienced my own set of side effects, but because my breast was less dense than pre-Tam, I knew it was doing what I needed it to do. I didn’t mind stopping when the time came, but I am grateful to have had it available to me.

  3. Melinda says:

    Carla,
    I have spent the last week reading your entire blog from the first post to the last post. I felt somewhat sad last night as I finished the last post–like ending a good book, but missing the experience. We are so much alike it is scary–from liking old houses, to calling people on their rude crappy behavior, living in the Philadelphia area, writers, profound thinkers, love of the countryside, a tween stepchild (I just got married Oct 2011), having been dumped by an ex a few years ago, almost the same age, having a wonderful man–‘sweet man” as you say : ) , and breast cancer. I guess the one notable difference is that you are a survivor, and I am just beginning the process–I rec’d the diagnosis on March 22.

    I was really ready to just lay down and die (seriously), however, when I found your blog, I was able to see more clearly. A lot of other sources I read were frightening in the way that I felt a horrific dread from them and a lifetime of pink bizarre stuff. I feel better about the Tomoxophen after reading your experience. The past month has been a bizarre arena of Dr.’s appointments, and a blur of “who am I? What is my name? When will I wake up from this dream?” Surgery is scheduled for May 14th. Chemo, Radiation, and Tamoxophen to follow. I feel like someone has gone: “Duck, Duck, GOOSE” and I was the goose who got the cancer. No family history save for 1-cousin who is younger than I (she is stage 4, aggressive tumor…in remission and doing ok). I am somewhere b.w. a stage 1 and 2–no one will know for sure until the surgery. It’s a low risk tumor. While I want the surgery immed. (like yesterday), I am still frightened to death over it….. I’m sure you understand this feeling

    I also had to laugh over your post about the orthotyping….hehe…I read your post about it last Thursday, and then Friday, I rec’d a similar call. 24-hours earlier I had no idea what the hell an “orthotype” is—sounds like a pair of shoes for seniors.

    Facing one’s mortality is the creepiest thing I have ever experienced.
    Anyway, I was hoping we could share more over the next few months. You have helped me tremendously–so much so that I could barely function until I started to read your words. I hope I can follow in your path. Amazing the support from strangers… and how “friends” can just sort disappear…. Going thru cancer is much the same as when you are going through a divorce/break-up. There are some people that think it’s viral and that they will catch it just by being around you. Then there are the others that think you are going to die tomorrow. I know people react differently to this type of information–I do get that, but some people just act like clods.

    Anyway, sorry for the length. I would have emailed privately, but I could not find an email address, so I hope me sending you this note/post this way is ok.

    Thanks Carla!
    Cheers,
    Melinda

    • Your response is something I didn’t expect. Wow. just thank you I don’t know what I’ll say I am in tears reading your post and the only thing I can tell you if it does get better. And I’m not finished with this blog yet, it is just that thankfully I don’t have as much to write about right now when it comes to breast cancer. I have a couple of posts rattling around in my brain truthfully, just haven’t had time to write them yet. I can’t tell you how much it means to me this message – thank you again

  4. Bess says:

    You opinion is based on your side effects and impacts. But many people like you and the doctors refuse to believe that others have much worse side effects that make us chose between quantity and quality of life. I have two working arms, legs, and a brain that barely gets me through daily living tasks (due to chemo brain damage that doctors ignored the toxicity signs despite tons of NCBI.nih links confirming to back down the dose,), if I use the AI I end up in a wheel chair and so fogged I’d rather be dead and consider it when the side effects finally lead me to take other prescribed medicine to zone out – what kind of living is that – not okay for everyone. Medically documented I have a VERY HIGH pain tolerance (I often refuse anesthesia because I cannot convince doctors to give me less and then followed how surprised they are afterward and agree I should have gotten less) , so when the GP who knew me before treatment sees me it is terrifying and alarming. If each patient didn’t have to train themselves to know what the oncologist’s should already know, than maybe we could all stay on a beneficial treatment and dose based on metabolism and tolerance instead of cattle drive one size fits all lazy ono care by the industry. Your progesterone idea for example, NEVER raised by any ono in our survivor group, mention estriol (the least dangerous of the three estrogens proven by studies safe for infrequent vaginal use in cancer patients) and the ono’s prescribe the medicine containing the worst of the three estrogens. We SHOULD NOT have to study and know MORE than the oncologists; so unlike you, we do NOT trust that big pharma has not twisted statistics – after all tamoxifen is herbicide that was accidently associated with impacts to cancer via field workers. Here is the kicker, I have NOT met a single oncologist that was aware that an ER+ cancer patient should NOT take tamoxifen if they were HER2+++ because it is known to fire up HER2 recurrence. Again, this should NOT have to come from the patient. Patients on tamoxifen should NOT take sleeping aids, cold aids, etc. that contain diphenhydramine (the active ingredient in benedryl, over counter sleep aids, cold/flu stuff) because it negates tamoxifen cancer fighting portion but still allows the negative side effects. The thought of tons of women struggling the handicapped effects of tamoxifen at the same time taking a cold or sleep medicine that cancels out all the benefits. My oncology knowledge I’ve gained to ensure my own health that I should NOT HAVE HAD TO RESEARCH has repeatedly saved my life with more than one oncologist. I learned the hard way to NEVER trust any doctor that is not willing to go into details that can support me researching it first, if they don’t or won’t, they are likely not knowledgeable enough or confident enough. In my humble opinion, oncologist’s are or were probably dentists that just took a 40 hour course in class oncology, sit behind a computer program and plug in sex, age, weight and blindly treat what the computer spits back. I get your article, I do, truly, but this is one of many instances that a person like you can NEVER understand because, hopefully, you will NEVER be standing in their shoes to “get it”. Also you mentioned health insurance, so I’m assuming you may not live in the United States because unless you can hold down a job (so glad you didn’t get brain damage from chemo) or rich you cannot afford it. In my case my husband came out of retirement in his 70’s to get company insurance and my AI, Femara, is not on any formulary so still costs over $700 a month – NO USA health insurance will cover it because it has a generic – which tons of women cannot take the generic because they lose use of limbs due to crippling pain, dizziness, confusion, and why bother living or take the medicine situation. I do not dismiss your blog – just saying I’m thankful you are ignorant on why many women decide to not take it – I pray you never “get it”. And if I hear one more lab rat for a big pharma or oncologist say the side effects are from menopause – then why do they go away when off the meds – because like EVERYTHING in this world … if it is said often enough the population will believe it. So big pharma, the FDA (same thing as saying big pharma), and cancer centers all chant the same mantra, side effect not from drug … So I respect your opinion even though it lacks respect for reasons others stop taking the drug – you luckily are mainstream users that can tolerate it, but for those that cannot – it is beyond abusive torture. Hopefully it will help you to know us same folks do implement other means such as diet ( e.g., foodforbreastcancer.org) and we always research many different sites and resources before selecting alternatives (e.g., nih, dana farber, etc.). Please forgive text/spelling – relearning speach/write/read basic tasks from chemo brain damage.

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